Friday, February 27, 2015

Thursday, February 26, 2015

It seemed a simple exercise. I was at Columbia University doing a a course for clinicians and writers on narrative medicine. In our small group, we were asked to write for five minutes on this prompt: “How did you get your name?”

Then we went around the table and read out our pieces. The stories that emerged were complex, powerful and in many cases deeply painful. Often times a person had been named in memory of a relative—but sometimes this connection was perceived as limiting, not liberating. Other times the child didn’t ‘click’ with his or her name, or family dynamics involved in the selection of the name caused discontent.

The exercise showed me how important the personal meaning of a name is and how people can interpret a word in strikingly different ways. Words matter and shape how we think about things. But sometimes the same word can evoke different or even opposing images or feelings in people.

Which brings me to the topic of how we name disability—or how we describe people with disabilities.

Back in the 1990s, when my son was born, there was a people-first movement that informed how we describe disability. The idea was that disability is a part of someone, but it doesn’t define them. So we referred to “a child with a disability” as opposed to “the disabled child.”

As parents, many of us alligned ourselves with this approach and still use it today.

But a rethinking of how disability is described is playing out on social media, where many adults with disabilities say they prefer to call themselves “disabled.”

“There’s something inherently blamey, to my ears, about ‘person with disabilities,’ although I have the utmost respect for people who prefer to identify with that term (or with other person-first language, like person with autism, or person with mental illness). It sounds less like a part of someone’s identity (autistic or autistic person, mentally ill person) and more like an appendage, an externality, something sort of clumsily attached; something someone is forced to live with. It also sounds like something a person should be able to fix or overcome, rather than an accepted part of that person’s identity and reality.”

Smith notes that “person-first language is…rooted in the medical model: Something is wrong with you. You should be fixed.”

In contrast, Smith describes the “social model: You have an impairment, and society disables you.” For example, “society is built for people who are not paralyzed, thereby making it difficult for you to fully participate in society as an equal.”

The social model of disability teaches that people are marginalized by the environment, people’s attitudes and inaccessibility, rather than the disability being something that resides within them.

Some childhood disability researchers have adopted this approach.

“‘Disabled people’—the terminology that I most often use—suggests that disability is not something a person has, but rather something experienced as a result of prejudice, discrimination and social exclusion,” says Bloorview Research Institute scientist Barbara Gibson, who is a co-author of Rethinking Rehabilitation: Theory and Practice expected out in March.

Among disability advocates there is a move to identity-first language. Lydia Brown describes this in a piece at The Autistic Self Advocacy Network.

…When people say “person with autism,” it does have an attitudinal nuance,” Brown writes. “It suggests that the person can be separated from autism, which simply isn’t true. It is impossible to separate a person from autism, just as it is impossible to separate a person from the colour of his or her skin.

“In the autism community, many self-advocates and their allies prefer terminology such as ‘Autistic,’ ‘Autistic person,’ or ‘Autistic individual’ because we understand autism as an inherent part of an individual’s identity—the same way one refers to ‘Muslims,’ ‘African-Americans,’ ‘LGBTQ,’ ‘Chinese,’ ‘gifted,’ ‘athletic,’ or ‘Jewish.’

Emily Ladau, a disability blogger at Words I Wheel By and contributor at the Disabled Girls Talk podcast (which is a really cool dialogue between two young women) expands on this idea.

“You wouldn't go out of your way to say ‘a person who is female’ or ‘a person who is Jewish,’ because neither of these things are perceived to be negative by society in the same way as disability. When you say person with a disability, it implies you want to remove the disability from the person, as though acknowledging their disability means they are less of a person. However, disability is simply a state of being—not something that should cause shame. And in fact, my disability identity is something in which I personally find a deep sense of pride...”

I think we should respect the words that people choose to name themselves, recognizing that we need to clarify the intentions behind them. Ask people why they choose certain words—don’t just assume that you know what's intended, which is what I used to do. In the past I interpreted the phrase ‘disabled children’ to be a devaluing of a group. I had my word police antenna up, and I was quick to judge.

But after listening to adults talk about why they identify as ‘disabled,’ and researchers explain their rationale for positioning people as being ‘disabled’ by physical and attitudinal barriers, I hear the words in a new way.

Emily Ladau, in a great read on language sums it up beautifully: “Language is rarely ever a clear-cut matter.” What do you think?

Tuesday, February 24, 2015

By Louise KinrossI’m often sent story pitches for what strike me as ridiculous products that in no way relate to parenting, let alone parenting children with disabilities—but which perhaps tell us something about our culture.

Case in point. This morning I got an e-mail suggesting a story about the Beebo—a rotating bottle holder you place on your chest while feeding so that your hands are free to read to your newborn (or accomplish other tasks—let’s not even go there).

A publicist suggested this would make a great story because it’s almost National Reading Month and four studies show that reading to a newborn boosts their development. For example: “According to analyses of the Program for International Student Assessment, which is given to 15-year-olds worldwide, the biggest factor influencing higher scores was whether or not a child was read to on a regular basis when they were young.”

Reading this story pitch on this particular morning made me cry. When my son was four months old, not a newborn, he loved to be read to, and he would sit in my lap and track picture books left to right, even though he had an undiagnosed and untreated hearing loss. The reason I cried thinking about that memory was that I heard some news yesterday that I didn’t want to hear.

The information was delivered by a very kind, committed person, but the news itself was related to yet another thing my son may never do.

He’s almost 21 now, and you’d think I’d have been given the extended list of what my son “can’t” do. Goodness, it’s not like we don’t have file folders full of bulky reports detailing the myriad of everyday things—like talking, or running, or doing a handstand in the pool or writing effortlessly, or reading at his age level, or having friends—that are beyond his grasp. Of course we also have reports on the ways in which we’ve tried to find alternate paths for these things—like a voice device to take the place of speaking—that have failed. Not always because my son “can’t” do what is needed, but sometimes because he “doesn’t want” to do it. And when a child grows up, you can’t always force them to do something in the way that you can a small child.

So in the case of a voice device, he finds them cumbersome and clunky (and as a Mama, I have to agree that they’re not intuitive and user-friendly the way mainstream business technology is).

But I digress.

Yesterday I was told that my son is likely incapable of doing something that the average person takes as a given and necessary and productive part of life.

It’s not that we, as his parents, weren’t aware that this prospect was unlikely. We may be hopeful, by we’re not stupid.

It’s more that we were hoping that there might be a different ending to this story, in the way that ever since he was born, and ever since his diagnosis, and all the way through his years of growing up, we have held onto hopes that we could “change his story” and make it what we wanted it to be for him. At first, we wanted to give him what we felt was a “just” and “fair” starting point for a person in this life, in the same way that we were given this starting point in our own lives, one that entailed many gifts of ability—not because we deserved it or had earned it. That is why they are called gifts. And when we couldn't give him that starting point, we thought maybe we could wrestle back some justice in the way he developed. You know, those stories about beating the odds that everyone wants to hear?

Whenever I get news like this, even though I know it’s counter-productive, I can’t help looking back and wondering what I didn’t do, what I could have done differently, and trotting out examples of other family situations that have turned out differently, even for individuals who have the same syndrome as my son.

Okay, maybe my kid was dealt a bad hand in life, but couldn’t he be one of the lucky ones amongst those kids who have been dealt the same hand?

And then I have to acknowledge that, in fact, my son has been making some nice gains recently in different areas—for him. The problem is that we will be the only ones to recognize them. He is on a completely different trajectory from other young people, an alien, if you would, on this planet. So those gains he makes don't mean anything here in this world. They will never be enough.

There isn’t any point to this post, any silver lining, other than the fact that one of our readers sent me a lovely message of compassion and encouraged me to stand back and regroup while holding on to the belief that our son’s life can still have meaning (even though it will in no way resemble that of others).

When I receive story pitches about products like the Beebo that are touted to significantly improve the abilities a kid is born with, I don't know whether to laugh or cry. Do parents need to worry about whether they’re immersing their newborn in reading? Will it make them better, more successful, parents if they’re reading to their newborn rather than cuddling and cooing to them? Will it change the course of their newborn’s life?

Cause I have followed, to the best of my ability, every instruction, every piece of stray advice and every therapy recommendation given to me to support my son since birth. And I have bought some of the craziest products and alternative therapies—at great expense—on the off-chance that a smidgeon of their marketing spin was valid. I work in a hospital, after all, it’s not like I don’t hear about the latest things. I started an international organization for families affected by my son’s syndrome. I know how to research. I know how to work hard.

And it didn’t make a difference.

So I say take your Beebo bottle holders—and your plans for raising your newborn’s IQ through reading—and shove them. If we don’t have time to hold a newborn, and his bottle, because we're too busy reading to them, something is seriously wrong with this world.

Sunday, February 22, 2015

Hanzhen Yap is a 16-year-old Malaysian artist with autism whose intricate sketches of historical buildings, animals and everyday objects have been shown in 27 exhibitions. He lives in Johor Bahru. For our interview below, Hanzhen's parents read him our questions. “For questions that he doesn't answer frequently, Hanzhen struggles to find the words,”says his mother Yvonne. His parents have elaborated on some answers. Please click the image above to see it in full.

BLOOM: What do you enjoy drawing the most and why?

Hanzhen Yap: I like to draw buildings. Buildings are nice, with lots of details. Arulmigu has the most details.

Parents: Hanzhen loves details. Somehow this has always been the right formula for him—the more complex is the object, the better is the outcome. Hanzhen is referring to his favourite sketch of the Arulmigu Rajamariamman Devasthanam Temple in Johor Bahru (see image below). This small Hindu temple serves the vibrant Indian community that [includes] some of the busiest and ethnically colourful shops around that area. Hanzhen seems to have captured the essence of this vibrancy in his sketch.

BLOOM: Do you draw real-life objects or from photos?

Hanzhen Yap: I draw from the photographs.

Parents: Hanzhen will take photographs of the object from many different angles and then he will select the angle that he prefers to sketch. In the case of a building, the ideal situation is when he is able to visit the site and spend some time there to absorb the atmosphere and the feel of the place before he starts on his drawing.

BLOOM: How did you learn to draw?

Hanzhen Yap: When I was small, Mom taught me how to draw. I also practised drawing with Pa. We drew all the things in the house.

Parents: Hanzhen is referring to the training sessions where we taught him speech and reading by pairing every word with a thumbnail sketch. We devised this simple speech training technique because he was a visual learner and could memorize what he saw. Together we drew everything around the house, from cups to keys, telephones, credit cards and even his father's feet! Soon he began to draw better than any of us.

BLOOM: How are you able to capture so much detail in your drawing? When I look at your elephant, for instance, I see so much more than I would normally see.

Hanzhen Yap: That’s my elephant “Loxodonta Africana!”(see below) I see a lot of details on the elephant’s face. It’s rough, it’s serious, and many many things...

Parents: Hanzhen sees objects in incredible details and interprets them in an ornate fashion, clearly displaying a unique style.

BLOOM: What is most difficult about drawing?

Hanzhen Yap: Difficult... when it’s on a big paper… like the JB Skyline. I get very tired after that.

Parents: His detailing to perfection and his desire for correctness are what make him tired.

BLOOM: Did having parents who are architects help you in your drawing?

Hanzhen Yap: Yes, Pa and Ma helped me to choose the picture to draw.

Parents: We are helping him create popular sketches and collections. We are like his manager!

BLOOM: How do you hope your drawings affect people?

Hanzhen Yap: I hope…. a lot of people will like my drawings.

Parents: His drawings give a lot of hope to gifted special artists. It opens up possibilities for parents seeking a future for their kids.

BLOOM: How do you get ideas for what to draw? I liked your collection on kettles. How did you decide to do that?

Hanzhen Yap: Pa and Ma helped me to choose.

Parents: We know the subjects that he will excel in sketching, thus we would channel his energy towards them. If we had already prepared a collection of subjects, then he would choose the ones that he prefers to draw first. For example, he had chosen to draw the Sydney Opera House, the Town Hall and the Harbour Bridge as his first subjects from our last Sydney trip. He enjoys sketching in a series that has a finite collection, almost mathematical in deciding.BLOOM: How has your autism affected you?

Hanzhen Yap: I don’t know.

Parents: Hanzhen has been told he’s autistic but he is not able to grasp why he is different and how autism has affected him. However, even before he was told, he appeared to be conscious of being different. Often, when in public or during functions, we see him looking at his brother for cues on how to act. He takes our directions very seriously in public areas, knowing not to confuse others who do not know his condition. However, he lets his hair down in the company of people that he knows!

BLOOM: What advice would you give to other youth who have autism?

Hanzhen: Try and draw like I draw and… become successful!

Parents: Great one, Hanzhen!

BLOOM: What would you like to do in the future?

Hanzhen Yap: I want to go to university… to learn to draw better.

Parents: Upon completing his O-levels, Hanzhen hopes to get a placement at the reputable Nanyang Academy of Fine Arts in Singapore to further his art education at the tertiary level.

Friday, February 20, 2015

In the summer of 2013, Mindy Scheier was faced with a problem. Her son Oliver, then nine, wanted to wear jeans to school.

Oliver, who has a rare form of muscular dystrophy, has trouble using buttons and zippers. He also wears leg braces, which don’t fit easily under restrictive fabrics like denim.

Mindy, who lives in Livingston, N.J., had a choice: she either had to tell her son he couldn’t wear the clothing he wanted, or send him to school without leg braces and risk that he might not be able to use the bathroom by himself.

“It was terrible,” she says. “I felt like I just didn’t know what the right thing to do was. Oliver views himself as a typical [child]. So he was completely confused as to why it was even a question whether he could wear jeans or not.”

In the end, Mindy let her son wear what he wanted. But the worry she felt as she sent him to school got her thinking about how limiting mainstream clothing was for children with disabilities. A fashion designer by trade, Mindy had adapted some of Oliver’s clothing in the past so that he could wear it comfortably. But the mom of three wondered how parents who didn’t have the sewing skills to modify off-the-shelf clothing managed to dress their kids with disabilities.

Then Mindy had a brainwave. Instead of thinking it was her responsibility as a parent to modify clothes that already existed, why didn’t she insist that companies create children’s wear that was adaptable in the first place?

With that idea in mind, Mindy, who in the past has worked for big names like Saks Fifth Avenue and Macy’s, decided to combine the two things she knew intimately about: clothing and disability.

Within a few months, she launched Runway of Dreams, a not-for-profit that aims to convince larger mainstream labels to produce adapted versions of current, fashionable clothes for children with disabilities. The company’s philosophy is simple: Kids deserve to wear whatever they want to wear. And it’s time for the fashion industry to step up and help them do it.

“We have plus-sized department and petite departments and maternity departments,” Mindy says. “And we have nothing for the differently abled community? It is so mind-boggling that this has not been done yet.”

Runway of Dreams isn’t the first company aimed at designing clothes specifically for kids with special needs. Other adapted clothing options exist, but they’re limited, often expensive and seldom trendy. Mindy hopes her project will ultimately give more people easy access to affordable clothes kids will actually want to wear.

Since she came up with the idea a year-and-a-half ago, Mindy has reached out to others to get a better sense of the range of clothing needs kids with disabilities have. She started with a large Facebook survey, which received answers from parents and children all over the world.

The survey revealed that people with disabilities struggled with three main things when it came to dressing. The first was fasteners: buttons, snaps and zippers seemed to be a problem for nearly everyone across the board. The second was the way clothing needed to be put on—kids with cerebral palsy or muscular dystrophy, for example, have low muscle tone, and can’t easily lift a sweater above their heads. The final issue was the ability to adjust the garment to fit—especially important for those with differently shaped bodies, and those with equipment like leg or back braces.

Using this information, Mindy designed a few prototypes and tested them with a group of high-school students and their parents at a school (see photo above). She partnered with Maura Horton, a Raleigh, N.C.-area woman whose company MagnaReady produces washable magnets that can be used in clothing.

They modified pieces with magnets—like a dress-shirt that opens along the back, allowing the wearer to slip their arms inside, and fastens easily.|

“It was one thing to talk to people but another to have them judge, feel, see the modifications that were made,” Mindy says.

Participants’ reactions confirmed for Mindy that Runway of Dreams was an important project. One boy with muscular dystrophy travelled an hour-and-a-half just to participate in the group. He told Mindy that he’d recently been accepted to Harvard, and that what he wanted most for his first day of university was to wear jeans like a typical freshman.

“Being able to wear what you want brings you personal confidence,” Mindy says.

“Differently abled kids are constantly being told, ‘You can’t play that,’ or ‘You can’t wear that.’ I think it will resonate that someone is saying, ‘You know what? You can actually. We’re going to make it happen.’”

So far, Runway of Dreams is in talks with one large clothing company, which Mindy hopes will lead to an official partnership. She’s also reaching out to other designers and manufacturers. Since adapted clothing caters to such an underserved market, she believes it’s in companies’ best interests to get involved.

“Forget about the feel good aspect of it,” she says. “There is a huge population of people out there that are ready and waiting for something like this to happen. They’ll spend their money on it.”

One day creating accessible clothing will be mandated, she predicts, and all companies will have to make a percentage of their clothing adaptable.

Until then, she’s pushing them to get involved. “As a mother, whether your kid has a disability or not, you know how hard it is not to have your child feel good about themselves,” she says. “I’m asking everybody to spread the word because we can make this happen together.”

At the very least, Mindy’s project has left her son (below) hopeful.

“Oliver and I were just interviewed on CNN,” Mindy says. “He ended the interview by saying, ‘I told my mum how lucky she is that I was born with muscular dystrophy. Because we wouldn’t be where we are right now if I didn’t have it!’”

To check out a great video on Mindy's work, or become more involved in the movement, visit Runway of Dreams.

Wednesday, February 18, 2015

By Louise Kinross Look at this illustration of an elephant. I couldn't stop. I kept seeing in the detail things that I hadn't initially seen.

This is one of my favourite sketches by Hanzhen Yap, a 16-year-old from Johor Bahru in Malaysia. Hanzhen's intricate drawings of animals, historical buildings and everyday objects like kettles have been shown in 27 art exhibitions. Hanzhen has autism, and his parents taught him to speak and read by pairing words with thumbnail sketches that they drew together. As a young child they drew everything around the house."He draws primarily from photographs, even though he draws very much better if he has seen the object recently where, we believe, the image is still fresh in his mind," says his mother Yvonne.I sent Hanzhen a list of questions about his art, his autism, and any advice he might have for other youth with disabilities. He's going to work on responses with his parents which we'll share in the next week or two.Hanzhen just completed a commission for the Consul-General of Singapore in Johor Bahru.I can't wait to share his thoughts on his drawing process. Stay tuned!

Tuesday, February 17, 2015

By Louise KinrossBecky Quinlan (top right) can’t say enough about the benefits of Connect2care—a new secure portal that gives parents and kids access to their health records at Holland Bloorview.

“My son Jack is pretty complex and seen in seven different departments,” Becky explains. “Now I can go online to see a list of all of his appointments and what’s pending, and it keeps me more organized.”

She also loves having Jack’s clinical reports at her fingertips. “Before I’d take a ton of notes at every appointment but now I can access that information in real time. I can also print out reports and take them with me to show other specialists.”

Holland Bloorview is one of the first children’s hospitals in North America to offer an online portal to families.

Becky is excited about new features that will be added to Connect2care soon. These include access to lab and microbiology results and two-way messaging with clinicians. “In the past when I had a simple question it might result in a couple of weeks of phone tag to get an answer. I’d phne and talk to the nurse, and the nurse has to talk to the doctor, but some of the specialists aren’t at the hospital everyday. With two-way messaging I’ll be able to type my question in and wait for a direct response.”

Becky is a family-centred care specialist at Holland Bloorview who’s helping to sign families up for the service. “I think it empowers us as patients and families to have our information at our fingertips.”

Connect2care was developed based on feedback from parents and clients and is part of a research study at the Bloorview Research Institute to see how it can be improved over time.

To get registered for Connect2care, visit Holland Bloorview Monday to Friday between 9 a.m. and 3 p.m. You’ll need to bring your child’s OHIP card and two pieces of identification. You can e-mail connect2care@hollandbloorview.ca with questions.

Thursday, February 12, 2015

By Louise KinrossIn 2013 Connor Sparrowhawk (with sister Rosie) drowned in a bath alone in a National Health Services assessment and treatment unit in Oxfordshire, England. The 18-year-old had autism, epilepsy and intellectual disability (referred to as learning disability in the UK). The NHS trust that ran the unit initially attributed his death to natural causes—but his parents called for an independent investigation that found his death preventable. Twenty months later, Connor’s mother Sara Ryan, a senior researcher and autism specialist at Oxford University, is still seeking justice for her son.BLOOM: Tell me about Connor.Sara Ryan: He was very quirky and quite eccentric. He had an enormously brilliant sense of humour. He loved transport—buses and coaches. He had a bit of an encyclopedic knowledge of history. He was very good with facts and figures and loved the legal system and the police. But he couldn’t leave the house on his own because he had no road sense and he couldn’t count to ten.BLOOM: When did he go to the unit called Slade House?Sara Ryan: He went to secondary school from 11 till he turned 18 and he was a delight really. Then when he turned 18, almost overnight, he got really anxious and very unlike himself. He was difficult to engage with, had lots of dark thoughts, and was in and out of school because he was aggressive. He began bashing his head against the wall and I was worried he was going to hurt himself or someone else. The night we admitted him he wanted to go home and they had to restrain him on the floor with four people face down and section him. In all his life with us, we’d never laid a finger on him. BLOOM: You had concerns after he went in, specifically about him having seizures there?Sara Ryan: He was part of a happy family and the minute he went into the unit, because he was 18, they treated him as an adult. We had to phone up to get permission from him to visit, which was very odd. They didn’t engage us at all and changed his medication. I visited and could tell he’d had a seizure because he’d bit his tongue and was very disoriented. They disputed that. BLOOM: What happened the day of his death?Sara Ryan: I got a call that he was unconscious and on the way to the hospital in an ambulance. When I got there the consultant said straight away that he was ventilated but there was nothing they could do. They switched off the machine while I was there. Two weeks later the NHS trust published in its board minutes that a ‘service user’ had died of natural causes.BLOOM: At the time of his death, Connor had been in the unit for 107 days but hadn’t been assessed or treated. What were they doing?Sara Ryan: He was there for 107 days and the psychiatrist saw him three times. The psychologist filled in some questionnaires, but they didn’t come to anything. They said they were going to do social stories with him, but they never did that. He was a school boy and they should have been taking him to school. But they gave him choices, so he’d say no and stay in his room and watch DVDs. BLOOM: How did you get an independent investigation into his death?Sara Ryan: Before he went into the unit I’d been blogging about our family's life with Connor. It was about all the amusing things he did. Lots of people subscribed to it and became very fond of him. When I posted one line on the day he died it went viral. And when we found out the trust was saying he died of natural causes—and was going to do an internal investigation that clearly wasn’t going to find out anything—we made a lot of noise online and eventually they capitulated.BLOOM: What did the independent investigation find?Sara Ryan: That it was a preventable death. The staff had the knowledge. They knew he was epileptic and I’d told them he was having seizures in there and was sensitive to medication change. They hadn’t properly assessed his epilepsy and he was left unsupervised in the bath. Twenty months later we’re still waiting for an inquest and the police are still investigating.BLOOM: I understand the unit was later closed?

Sara Ryan: Nothing happened after Connor died and we contacted the Care Quality Commission. They were about to do an inspection there. They were so shocked by what they saw that they failed the unit on all 10 quality and safety standards and the trust decided to shut the place down. There was no battery in the defibrillator. It was dirty and there was no therapeutic environment. BLOOM: What accountability do you want from the NHS trust?Sara Ryan: We want the staff to be disciplined, as appropriate, and a corporate manslaughter charge brought against the trust. We want meaningful involvement at the inquest, which is provisionally set for Oct. 5. We also feel that the commissioners who were commissioning the service—which cost about $1,000 a day—have some role to play. The commissioners spend money on services that you wouldn’t let your dog stay at.The mortality rates of people with learning disabilities in the UK are shockingly high.* Because the trust said Connor’s death was ‘natural causes’ we were concerned that learning disabled people might die regularly in hospitals and units and their deaths wouldn’t be properly investigated. Through our campaign we had a meeting with the chief executive officer of NHS England and he agreed to commission a review into deaths since 2011 of people with learning disabilities and mental health issues in the care of the trust. We want the law changed so that families don’t have to pay for legal representation at the inquest and we believe there should be an independent investigation if someone with a learning disability dies in a hospital or other secure setting. BLOOM: In a report you produced, you wrote about the lack of humanity in how your family has been treated.

Sara Ryan: I think how they treated Connor was extended to us after he died. They stripped away any sense of him being part of a family and treated him as an object. Once he died they didn’t demonstrate any empathy or compassion or understanding for the pain they caused us and for all kinds of delays and obstructions and deceit really. It’s made what was such a horrific and unimaginably awful situation so much worse. For example, they had the trust’s barrister sit in at a pre-inquest review and try to argue that drowning is a natural cause of death. BLOOM: What will your legal costs be?Sara Ryan: Families in the UK don’t get any legal help for inquests and it will cost us almost $50,000. The NHS trust draws on public funds to arm itself with very good legal representation. We were able to raise the money we need through our social media campaign and selling postcards and other fundraising efforts, which is quite remarkable.BLOOM: In your report you say ‘The ultimate barrier appears to be that learning disabled people are seen as less than human.’Sara Ryan: Generally, in the way our social life is organized, our kids tend to go to special schools and leisure activities aren’t accessible, so people don’t come into contact that much with people with learning disabilities. The chance of having a job is low, so there isn’t a big community presence. When I started blogging about Connor I made him human in a way that he hadn’t been seen outside of his family and school. Even my colleagues started to chat with me about him. After the weekend they’d say ‘it was hilarious that Connor did this or that.’ They began to see that he was a quirky, funny young man. Ultimately we need to bring the human back so people can appreciate these kids as individuals like anyone else, who just have their own ways of doing and saying things. BLOOM: You’d like to see more money allocated to community supports?Sara Ryan: Assessment and treatment units like the one Connor was in have complicated costing arrangements and the money doesn’t tend to follow the person from the unit back to the community. Often the local authority has to find the cost of the support package. You might be able to stay in a place that costs $1,000 a day (indefinitely sometimes, a National Audit Report published last week found the average stay for someone in an assessment and treatment unit is 17 years), but when you come out the local authority hasn’t got the funding because of cuts to welfare costs. In addition, no one seems to know what good care looks like. *A 2013 inquiry into the deaths of 247 adults and children with intellectual disability in England and Wales found women with intellectual disability died 20 years earlier on average than the general population and men with developmental disability died 13 years earlier. Over a third of the deaths could have been prevented with good health care.Please see a talk Sara Ryan gave at a patient experience conference at the University of Oxford: How to hear voices that are seldom heard

Tuesday, February 10, 2015

Meet Julia Hanigsberg, the new president and CEO of Holland Bloorview (in photo with daughter Rachel). Julia comes to us from Ryerson University, where she was vice-president of administration and finance. Here she tells us more about her own family's experience with disability and how she's learning about the hospital "from the ground up."BLOOM: What does your experience as a parent of a child with disability add to your role here?Julia Hanigsberg: I think it gives me a perspective on the complexity of the lives of our clients and families and a real appreciation of how every child—and every family circumstance—is unique. I think that’s even more the case in childhood disability than in other medical settings. Our client population has so many different vulnerabilities and exceptionalities and I have a real sense of that and of what families go through in trying to achieve the best opportunities for their kids.

BLOOM: Can you tell us a bit about your daughter?

Julia Hanigsberg: Rachel is 18 and we’ve been through a journey of diagnoses with her. She was born prematurely at 29 weeks and has global developmental delay. Then 15 years later there was a new diagnosis of autism. She also has some associated mental health issues like anxiety. I know that the diagnostic world for our kids is often longer and not so straightforward. There are layers, and things emerge over time as our children change. The world in which we operate is not a ‘one-size-fits-all’ world.

Rachel is in high school and she’s a very typical teenager who loves YouTube and her music—very loud music—and her privacy and space and wants to be independent. Her school is a great fit and she’s very enthusiastic about starting co-op because she’s excited about the world of work. She loves to shop, so she thinks working in stores will be lots of fun.

BLOOM: What’s been the greatest challenge parenting Rachel?

Julia Hanigsberg: Two things. One is navigating the system and knowing what to do when. Knowing that you’ve explored all the possibilities, you haven’t left any stones unturned. It’s a two-edged sword because when they’re little, and even now, you don’t always know what the possibilities are. The nice thing about having a teenager is that they have their own ideas about what they want to do.

The other challenge is moving into the adult system and that transition point is a very serious concern. Rachel’s 18 now so we are right in the heart of that—thinking of what the long-term future holds. School will end and that will be an enormous point of transition for her. As long as your kid is in school you know that they’re well taken care of for a good chunk of the day. The path for my daughter after school is less clear.

I’m conscious of the fact that my experience as a parent is just one parent’s experience. For example, our experience is very different from a parent who has a child with an acquired brain injury—where in a moment everything changes for their typically developing child. I gave birth at 29 weeks and we had a long time to move into the world we were in.

I’m also very well aware of the privileges I have. English is my first language and I don’t have a job where taking half a day off for my daughter’s medical appointment isn’t an option.

BLOOM: Can you tell us about your background?

Julia Hanigsberg: I’m a lawyer by background. I think that’s a fantastic educational background for being a problem solver. You come out with a structured way of thinking about problems. Very little of my career has been spent as a traditional lawyer. I spent 10 years in the provincial government, mostly with the Ministry of the Attorney General and in the Cabinet Office doing policy and legislation-focused work. I was chief of staff to a cabinet minister so I have a broad view of the workings of government from a civil service, policy and political perspective.

Then I went to Ryerson and spent five years as the general counsel and secretary of the board and five years as vice-president of administration and finance. It gave me time to understand how big organizations work and how you make difficult decisions within the context of large organizations. One thing I took from my time as a trustee of the board at Holland Bloorview and applied at Ryerson was related to client- and family-centred care. Family leaders here are involved whenever there’s a big procurement decision. At Ryerson, we never would have involved students in that kind of decision. So when Ryerson put out a request for proposal for a new food management company I suggested we have two students on the selection committee. It was fantastic.

BLOOM: Why do you believe that social media is important in your role?

Julia Hanigsberg: Two reasons. One is giving people an opportunity to get to know me as Julia and as the CEO of Holland Bloorview and demystifying the role. People who follow me on social media and talk to me in the halls will see there isn’t a big disconnect. As much as I’m trying to meet every person, it’s hard to do that, so I want to find other ways to expand how I connect with the team that works here and with clients and families. The other is to be part of the ecosystem of sharing of quality Holland Bloorview information that I can disseminate out to the world. My experience with social media is that you frequently make connections online that result in incredibly valuable personal and professional connections. There is a richness there that not everyone appreciates.

BLOOM: Research shows that parents of kids with disabilities are at greater risk of depression and anxiety and physical problems. What strategies have you used in your own life to take care of yourself?

Julia Hanigsberg: It’s a struggle that every parent has, period, and our parents have much more complex families. The other area we read about is resilience—in our children but also in ourselves. Building up capacity for resilience is like building up a muscle. I think that’s quite inspiring and something to be really thoughtful about.

A lot of what we do personally is the normal stuff—eating well and exercise—because you know you’re going to have to absorb and do more. We’re very lucky in that we have a lot of family around us. Respite is so important. We do a lot of that here at Holland Bloorview for our clients and families. In my family, we have nephews and nieces and grandparents who are really involved. So my husband and I can go away for a weekend, pretty infrequently, but we can do that. The support of family also means we can spend time with our other kids. I have 14-year-old twins. So it’s building resilience for the whole family.

BLOOM: How can the hospital best support parents so they feel able to advocate for their child?

Julia Hanigsberg: I’ve been really impressed with our Family Leadership Program. I think the hospital’s investment in the leadership of families is extraordinary and they can take that into the rest of their lives. When I joined the board of trustees the family advisory used to meet in the boardroom but now they meet in the conference centre because they can’t fit in the boardroom. We’ve trained over 100 family leaders. There are also more informal ways like our Parent Talk groups where parents can create networks that help them learn.

BLOOM: What would you like our parents to know about your plans for the hospital?

Julia Hanigsberg: It’s too early to talk about plans for the hospital. Right now I’m learning and listening and focusing on having experiences as the way I learn. People have been incredibly generous in sharing clients and families with me, encouraging me to participate in clinical team meetings and huddles, to help me better understand how the hospital works from the perspective of families and our extraordinary team of staff. My orientation is to learn the place from the ground up, not from sitting in this office.

BLOOM: What do you see as the hospital’s greatest challenge? Greatest strength?

Julia Hanigsberg: I don’t think it would surprise anyone to know we’re challenged financially, and, but for money, there’s more we would do. Space is an emerging challenge. We’re not there yet, but at a certain point we’ll want to do things and be limited by the lack of space. I think the hospital has made smart, economical and efficient use of its resources.

Everyone in the place has huge ambition and that’s an enormous strength. Everywhere I go, people want to do more and better and I think my role is to find the path that allows them to achieve their ambitions for Holland Bloorview. I don’t need to set out the ambitions. Talk to anyone who works here and they’re excited about what they do and have a huge vision for what that could be.For a window into Julia's first weeks at the hospital follow her on her blog or on Twitter @Hanigsberg.

Monday, February 9, 2015

‘Our Curse’ tells the story of a Polish couple whose son Leo is born with a rare syndrome that prevents him from breathing while asleep. Without the support of a ventilator, he will die. The film, by Leo’s dad Tomasz Śliwiński, is nominated for a 2015 Academy Award for Documentary Short. You can watch it in its entirety on The New York Times.

Leo’s syndrome is known as Ondine’s Curse—or Congenital Central Hypoventilation Syndrome (CCHS). Leo’s dad writes that “He evolved from a 'curse' (a term we took from the disorder’s name), an alien creature with lots of medical noisy equipment, into our truly beloved son, without whom we could no longer function.” The movie is a beautifully honest look at how parents try to make sense of a life-threatening illness in their newborn. BLOOM will run an interview with Leo’s mom Magda in the print magazine coming out at the end of this month. Here’s a sneak peek.

BLOOM: Did making the film help in your healing process?

Magda Hueckel: Yes, definitely. First of all, it was very important while we were shooting. It was a really dark period for us, and sometimes we had no strength at all. Leo was still in the hospital, and after coming back home, all we could do was sit and stare at the wall. Nothing seemed important or worth any effort. But, once we decided to make the movie, we had to mobilize ourselves, take a camera and start shooting. It made us active. We felt that we were doing something creative.

And then—watching the movie helped us accept the trauma that we went through, to cry it out, to finally put it in perspective, and start a new life. It was the best therapy ever.

BLOOM: Did health workers help you feel that you could cope with Leo's medical needs?

Magda Hueckel: Unfortunately, the medical care was not perfect. Of course we have met many great nurses and doctors, who have been really involved, but in the beginning we felt very alone. All the knowledge we have, we had to seek from other families who deal with CCHS or from doctors that we reached out to.

BLOOM: What advice would you give parents of infants who have life-threatening illnesses or complex medical needs?

Magda Hueckel: Never give up. Check out everything. Someone tells you your child won’t walk—keep trying; your child won’t eat—give him a chance. It is worth your effort. And never lose hope—medicine is developing and miracles happen. And try to enjoy your life as it is. Even if you cannot do many things and you have a lot of restrictions—you can choose other activities. There are millions of possibilities. You can be happy, you can enjoy your life, you can push yourself to grow.

BLOOM: How is Leo's health now and what does he enjoy?

Magda Hueckel: He is four years old and he is a great guy. He loves travelling. He is starting to read and speak. He is really a happy boy. All his adventures are described on our blog—an English version is available at LeoBlog.

Sunday, February 8, 2015

By Louise KinrossThis is Katie Hebert with her doll with a stomach feeding tube and brother Nathan. "We heated up a skewer and used it to melt a hole in the doll's stomach and then just placed the tube as usual," says mom Kyla. "The kids thought the 'operation' was so cool."Katie has suspected mitochondrial disease and her family in Texas has adapted her dolls to be like her. I received Katie's photos, and many from other families, after our story about Melissa Shang and her petition to have American Girl release a doll with a disability. We'll share more pictures in the BLOOM print magazine later this month. And...I am interviewing Melissa and her older sister Eva tomorrow about their campaign to see kids with disabilities represented in dolls and books and media.Below is a picture of Katie with a monkey with a g-tube made for her by Tubie Friends, a non-profit that adapts toys free of charge so that they have medical equipment or features like their owners. "They do all kinds of modifications, feeding tubes and traches and ports and even heart-surgery scars," Kyla says.And below that is Katie with an American Girl doll who has a wheelchair, glasses and a sock-monkey hat like her.

Friday, February 6, 2015

Check out this video of Rick Mercer spending a day at Variety Village, the fitness and sports club in Scarborough, Ont. for people with and without disabilities.

Variety Village’s physical design, accessible equipment and welcoming culture make it easy for kids and adults of all abilities to enjoy exercising.

Now the club is offering families who receive services at Holland Bloorview a great deal: a free four-month membership to children aged four to 12 years and two free programs—or a subsidized annual membership to families of children with disabilities.

Thursday, February 5, 2015

In January I wrote about Melissa Shang, a girl who at age 10 got 150,000 people to sign a petition asking American Girl to release a doll with a disability. Melissa has a form of muscular dystrophy. The company hasn't.

Then I heard from the Pots family in St. Catharines, outside Toronto. Pictured above are Emily, Sophia, Rachel and Janneke. Rachel and Janneke both use wheelchairs now and have global developmental delay with no diagnosis.Their mom Sara sent me a photo (below) of an American Girl doll that Emily and Sophie had adapted to reflect their family's experience. They purchased the wheelchair from American Girl. But "the hand splint, g-tube, tinted glasses (for vision clarity) and ankle-foot orthoses were modified by 'Pot Home Health Supplies,'" Sara says, aka Emily and Sophia. "My kids get more satisfaction out of making the pieces.

"From the very beginning Emily and Sophia insisted we save money for Rachel and Janneke to have a doll in a wheelchair," Sara says. "As they began to visit the American Girl stores and website, they were frustrated to see there were little to no props for girls with disability. What I love about that frustration is that it comes from their own hearts. My hope is that they will continue to see places and things that need representation of all, not just in the doll world, but beyond."Do your kids adapt their dolls in this way? Please send your pics to lkinross@hollandbloorview.ca and we'll share them. Photo by Elma Regnerus

Tuesday, February 3, 2015

Looking for an interesting read? Check out the disability and parenting stories we've collected recently. But first, I'd like to introduce you to Julia Hanigsberg, the new president and CEO of Holland Bloorview (in photo with Jillian Peters). You can get a unique window into Julia's first few weeks at the hospital on her blog or follow her on Twitter @Hanigsberg. Julia comes to us from Ryerson University, where she was vice-president of administration and finance. She's the parent of a child with a disability. You'll hear more about Julia in an upcoming piece in BLOOM. Welcome Julia! LouiseHomeschooling, and teaching, a child with Down syndrome The New York Times Motherlode blogBLOOM contributor Kari Wagner-Peck debuts in The New York Times with a piece on what happens when she homeschools her son with Down syndrome. Kari always writes with humour and great insight. Trapped in a virtual coma but aware, Martin Pistorius breaks free, CBC The CurrentMartin Pistorius was a healthy South African 12-year-old until meningitis took his ability to move and speak. Doctors told his parents he was 'a vegetable.' Years later he regained the ability to communicate. This morning he did this interview with his voice device.Airlines break too many wheelchairs Al Jeezera AmericaExcellent piece on how common it is for airlines to break wheelchairs and the impact this has on frequent flyers.How to measure a medical treatment's potential for harm The New York TimesFewer people benefit from medical therapies than we think. The Number Needed to Treat (NNT) tells you the number of people who would need to receive a therapy in order for one person to benefit. The Number Needed to Harm (NNH)is the flip side. Interesting.

The BLOOM blog welcomes comments from readers on issues that affect parents of children with disabilities. We moderate comments to ensure they’re on-topic and respectful. We don’t post comments that attack people or organizations.